I joined Action for M.E. just over nine months ago. Since then, I regularly hear stories about how this illness devastates all aspects of people’s lives and it’s heart-breaking. There are an estimated 250,000 people with this illness in the UK and many more families, carers, children and others affected by it.
It’s an illness that is very much hidden. It’s much more than ‘just feeling tired’. M.E. is a highly complex, organic illness of uncertain duration that is defined by the World Health Organisation as a neurological illness. The terms M.E. and CFS (Chronic Fatigue Syndrome) are often used interchangeably within the health service.
There are a wide range of symptoms that affect many of the body’s systems, more commonly the nervous and immune systems. Within this range of symptoms there is wide spectrum of severity, from mild to moderate to severe. Everyone who experiences M.E. has a different pattern of illness. While most people improve and some recover, it is thought that 20-25% of people remain severely ill, house and often bed-bound for many years, even decades.
Reports by Aviva identify M.E./CFS as being in the top three most challenging illnesses for GP’s with 42% of them concerned that the NHS will no longer provide M.E./CFS services by 2015. They also reported a 25% increase in the number of patients with this illness earlier this year.
There is so much to do but as the leading UK charity for people affected by M.E. providing information and support to over 300,000 people per year, we are up for the challenge…and there is a lot to be hopeful about!
Action for M.E.’s mission is to empower people with M.E. to fulfill their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure. We do through this through our three strategic touchstones:
- Inform & influence: Increasing understanding and awareness of the illness and its impact alongside working to influence policy-makers and others to increase investment in research and improve the services, care and support for people affected by M.E.
- Empower & support: Providing a range of services to ensure that people have the information and support that they need at a time that they need it.
- Research: Supporting and funding high-quality evidence-based medical and social policy research to help us learn more about the illness and to stimulate greater mainstream funding of the M.E. research. It’s an exciting time within the research field and we are working collaboratively to create the insight and developments so desperately needed.
Alongside raising awareness/understanding and research, our three other priorities are: health, welfare and employment. You can find out more in our Statement of Strategic Intent which sets out what we want to achieve over the next three years.
We receive very little government funding so the support of Really Useful Stuff is incredibly important. The everyday products available on this shop are excellent and will provide much benefit to a wide range of people, including those with M.E. It’s great to know that not only are the team behind RUS innovative and good business leaders but they are also passionate about making a difference and supporting organisations like Action for M.E. This will help us to create the change that is so desperately needed and move a step closer to our vision of a world without M.E.
The Really Useful Stuff team would like to thank Sonya Chowdhury for writing this fantastic guest blog for us.